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Author Topic: Hep C kidney trial?  (Read 566 times)
Naynay99
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« on: April 02, 2019, 03:21:23 PM »

Hey. So when I was at my tx evaluation the coordinator mentioned that one possible way to shorten the wait was a clinical trial they were doing transplanting hep c positive kidneys into hep c negative patients.  Then they cure the hep c with the new antivirals they have for it.  She didnít think I would qualify bc of my previous tx tho and didnít bring it up again. 

Anyway I just spoke to my Neph about it and he said he has had patients who had success with it.  I think 2 of the 3 were actually already hep c pos and instead of treating them before transplant they waited until after bc wait time was much less time for a hep c kidney, so itís not exactly the same thing.  But he said if I had an opportunity to get a ďhealthyĒ hep C kidney he recommended going for it, saying the hep c drugs are almost 99% effective in curing it. 

Anyway I just looked it up on the clinical trials website and it looks like they are still recruiting for it and sounds like i fit the requirements for inclusion in it.  So I was going to call and inquire more info about it.   What do you guys think?  My mom thought it seemed crazy to purposely give yourself Hep C, what if the meds didnít work?  Idk.

How do they decide who gets to participate in clinical trials anyway?  Anyone ever involved in one before?  It canít hurt to at least contact them I suppose.  Idk. What do you think? Would you risk it if it meant very little wait time for a kidney?  The idea is sounding better as I wait for that call and the reality of dialysis keeps getting closer. 
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iolaire
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« Reply #1 on: April 02, 2019, 03:36:19 PM »

I donít know the true risks of such a transplant and treatments but I worry it leads to unessary risks.

I wouldnít do it if you are relatively healthy and would qualify for a good quality kidney.  I say relatively healthy as that might mean you have an ok experience with dialysis.

Also Iíd factory in your existing wait time on the list. If you are past the midpoint of the wait time Iíd look at it less favorably.

I say the above because I believe many people live well on dialysis and it might be better on your body to wait a few years on dialysis rather than submit yourself to infection and treatment.

Unless you have alteristic motive for participating in such a trail Iíd save it for people who have a long wait, might not qualify for a good kidney, or who donít talorate dialysis well.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
rcjordan
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« Reply #2 on: April 03, 2019, 05:06:50 PM »

Certain transplants safe with hepatitis C infected organs, study finds - CBS News
https://www.cbsnews.com/news/transplants-safe-with-hepatitis-c-infected-organs-study-finds/
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Coastal US, NE North Carolina
2018 right nephrectomy - cancer. Left kidney not filtering, start hemo. After 3 months, start Nxstage home hemo
rcjordan
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« Reply #3 on: April 03, 2019, 05:30:33 PM »

<added>

Found more info

One Year Posttransplant, Recipients of Hepatitis C Kidneys Disease-Free
https://www.hopkinsmedicine.org/news/newsroom/news-releases/one-year-posttransplant-recipients-of-hepatitis-c-kidneys-disease-free
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Coastal US, NE North Carolina
2018 right nephrectomy - cancer. Left kidney not filtering, start hemo. After 3 months, start Nxstage home hemo
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